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The Easiest Way to Declutter with Chronic Illness

February 25, 2021 By Sandy Leave a Comment

Woven square basket labeled "donations"; set against a background of greenery

Ready to part with all of the stuff that you don’t need? Don’t make it harder than it needs to be. Here’s the easiest way to declutter when you’re chronically ill.

There are bones on my dining room table. One is a humerus, I think. Or is it a tibia? In either case, they look like clutter to me. But I can’t get rid of them.

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Filed Under: Living Well

A Simple Plan for Decluttering with Chronic Illness

February 17, 2021 By Sandy Leave a Comment

White flowers next to notebook with pastel watercolor floral design and silver pen

Are you overwhelmed by all of your stuff? Are you ready to simplify and get your house in order? If you’re not sure where to start, I have what you need: a simple plan for decluttering.

I’d be lying if I said I own too much stuff. Because the truth is that it owns me. Our stuff is like that, isn’t it? We allow it – we actually invite it – into our homes. And we coexist quite happily until we just don’t need each other anymore. But like a bad relationship that we just can’t bring ourselves to end, we hang onto it.

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Decluttering with Chronic Illness: Stop Wasting Your Time!

February 7, 2021 By Sandy 4 Comments

messy room full of clutter

Getting rid of clutter. Everybody’s doing it. But would you believe me if I told you to stop wasting your time decluttering?

Why? Because when you’re chronically ill, you can’t afford to part with your energy. Also, you’re probably doing it wrong.

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Filed Under: Living Well

The Life-Changing Lessons of My Rare Disease

December 30, 2020 By Sandy Leave a Comment

Close up photo of a newly-emerged butterfly

In spite of (or maybe because of) the roller-coaster year we’ve had, I’ve learned life-changing lessons from living with chronic illness – and have emerged stronger.

Self-reflection. It’s a good thing, right? And if ever there was plenty of time for wholehearted soul-searching, it was 2020. But damn, this year needs to be over.

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Filed Under: Living Well Tagged With: gratitude, self-care

Four Big Mistakes that Chronically Ill People Make

December 19, 2020 By Sandy 1 Comment

Close up photo of a dictionary entry with the word mistake and its definition

Our lives are fraught with missteps and mistakes. Here are a few of the big mistakes that chronically ill people make.

I’m stuck. You probably know the feeling – the ongoing sense of being completely trapped at worst, or at best, feeling suspended in a state of inertia. I’m not moving backward but I’m sure as hell not moving forward.

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Filed Under: Chronic Illness

How to Fake Being Well When You’re Chronically Ill

November 29, 2020 By Sandy Leave a Comment

Masquerade mask with brightly colored ribbons

Living with chronic illness isn’t easy. It’s even harder when we fake being well – because there’s a price to pay for doing it.

Do you ever feel like the you’re the great pretender? It’s easier than you’d think – especially if you have a chronic illness that also happens to be invisible.

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Filed Under: Chronic Illness Tagged With: self-care

How to Stop the Sabotage of Negative Self-Talk

November 1, 2020 By Sandy 4 Comments

Happy and sad faces drawn on sticky notes, representing the concept of human emotions.

Living with a chronic illness can predispose us to negative self-talk. It can be hard to prevent our limitations – real and perceived – from changing how we see and value ourselves.

I don’t know anyone who claims to be immune to the potential ravages of negative self-talk. We all do it – although not necessarily to the same degree. Self-doubt, self-loathing, self-consciousness, self-deprecation – I could go on. But I’m guessing you know exactly what I’m talking about.

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Filed Under: Living Well Tagged With: emotional health, self-care

The Pitfalls of Prednisone: Surviving the Side Effects

October 18, 2020 By Sandy 4 Comments

Eastern Chipmunk standing on a mossy log with its cheek pouches full of food

It’s widely prescribed and can be wonderfully effective. But the side effects can be wicked. Here are some tips for surviving the side effects of prednisone.

Have you ever taken prednisone? If you have a chronic illness or autoimmune disease that is inflammatory in nature – as so many are – you probably have. And taking prednisone is like balancing precariously on a double-edged sword somewhere between gratitude and madness.

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Filed Under: Autoimmune Disease Tagged With: treatments

Half Full: The Hidden Upsides of Chronic Illness

September 29, 2020 By Sandy Leave a Comment

a glass half full of water surround by lemons, representing the glass half-full/half-empty concept

I never anticipated that I’d find the hidden upsides of chronic illness. If you dig a little deeper you’ll find them, too.

Have you ever been asked if you’re a “glass half empty” or “glass half full” type of person? I’ve never thought of myself strictly in terms of being optimistic or pessimistic. I choose to think of myself as realistic.

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Filed Under: Chronic Illness

Parenting with Chronic Illness: What you Should Know

September 15, 2020 By Sandy Leave a Comment

mother in yellow summer dress holding hand of child and walking through wheat field

Parenting with chronic illness presents unique emotional and physical challenges. But there are things we can do to help our children – and ourselves – thrive in spite of our illness.

I’m not the mom I’d hoped I’d be. I have – more than once – allowed myself to re-examine the past. And I wonder how I might have parented differently if I hadn’t been ill.

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Filed Under: Chronic Illness Tagged With: parenting

Three Simple Ways to Offend a Chronically Ill Person

September 8, 2020 By Sandy 8 Comments

Cute cloud with lightning strikes on a bright purple background with an offended and angry expression

Family and friends mean well. But sometimes their efforts to make us feel better actually make us feel worse. Here are the top three things not to say to a chronically ill person.

I struggled with the title of this post. I could have gone so many different directions! From the decidedly diplomatic “What Not to Say to Someone who is Chronically Ill” to the definitively assertive “How to Completely Alienate Your Chronically Ill Friend or Family Member in Three Easy Steps.”

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The Surprising Link Between Pets and Our Health

August 24, 2020 By Sandy Leave a Comment

black and white dog with brown eyes, long fluffy white fur on chest

Pets enrich our lives, and there’s a proven connection between pets and our health. But do you know the science behind it?

It occurred to me that for the past thirty years I’ve never been without a pet. From the sweet brown tabby cat I adopted from a shelter in 1990 to our current trio of furry companions, animals have been a constant in my life.

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Filed Under: Living Well Tagged With: emotional health

What You Need to Know About Chronic Illness and Employment

August 17, 2020 By Sandy Leave a Comment

woman appearing stressed sitting at desk with laptop, phone and notebooks

Your job does not define who you are. Here’s what you need to know about chronic illness and employment so that you can make the best choice to honor your health and your heart.

Right or wrong, we’re strongly connected to the work that we do. We allow it to define us, and that’s a mistake. I’ll set the stage: you’re at a party or some type of get-together and you’ve just been introduced to someone.

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Filed Under: Chronic Illness Tagged With: chronic illness, employment

Three Things I Wish Doctors Knew

August 13, 2020 By Sandy 5 Comments

doctor comforting patient in hospital bed

There are three things that I wish doctors knew – because these are the things that make the good doctors great.

I have a love/hate relationship with the medical profession. I’ll bet I’m not alone. I envy people who see their doctor once a year for an annual check-up, and maybe make the occasional visit for a sinus infection or a rash. I’m not that person. If you’re chronically ill, you’re probably not that person either.

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It’s Okay to be Angry When You’re Chronically Ill

August 2, 2020 By Sandy 2 Comments

gray scale photo of stormy sea with large waves

Anger is often a mask for grief. It’s okay to be angry when you’re chronically ill. Once you acknowledge it you can find effective ways to cope so that you can live well.

There are moments – and not just a few – when I recognize that words are the way to the soul. Sometimes, a chain of simple words are tethered together so perfectly that they are extraordinarily profound.

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Filed Under: Living Well Tagged With: emotional health, grief, self-care

Fall Asleep Faster – Plus Two New Techniques to Try

July 26, 2020 By Sandy Leave a Comment

close-up of tan and white dog peacefully sleeping on a bed

There are lots of techniques you can try if you want to fall asleep faster. But when the conventional approaches aren’t working, it’s time to give these two unconventional methods a try.

Sleep. A solid night’s sleep. Don’t I wish! Insomnia is an equal-opportunity condition. A quick Google search produces about 71 million results. And while it’s estimated that it effects 30% of the population, knowing that you’re not alone doesn’t make it any easier when you’ve looked at the clock at 1:20 am, 2:40 am and 3:45 am (you get the picture).

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Filed Under: Living Well Tagged With: insomnia, self-care

How to Define Your New Normal When You’re Chronically Ill

July 19, 2020 By Sandy 4 Comments

The concept of a new normal, where a situation requires a change to our lifestyle. Presented as a word written in notebook on office desk.

Illness often forces us to change how we live – to find a “new normal”. But there are ways to define your new normal so that you can live well and thrive.

Has anyone told you that you’ll find your “new normal”? I remember thinking about my own “new normal” way back in 2006. I had completed a hell of a long course of treatment for non-Hodgkin’s lymphoma and was in what I like to call the “now what?” phase. The treatment was over. Now what?

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Filed Under: Chronic Illness Tagged With: new normal

Easy Ways to Boost Your Mental Wellness

July 8, 2020 By Sandy Leave a Comment

colorful hot air balloons rising on a sunny day

It’s hard to feel productive when you’re too tired to do anything. So when your body demands a break, take the opportunity to boost your mental wellness.

Have you ever felt like your brain wanted to do something but your body wouldn’t cooperate? I have. So. Many. Times. Like many other types of chronic illness, my autoimmune disease is unpredictable. It seems like it’s unpredictability is the only predictable thing about it.

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Filed Under: Living Well Tagged With: emotional health, self-care

Why You Shouldn’t Compare Your Progress to Others

June 29, 2020 By Sandy Leave a Comment

The one thing that everyone who’s suffering from a chronic illness wants is to get better. But don’t compare your progress to others – you are unique and your road to healing is unique, too.

We know that our disease can’t be cured, but we hope for and can reasonably expect to manage our disease to some degree – enough to see and feel some level of progress. And the possibility for some level of healing means that there is reason to hope.

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The Grief of Chronic Illness – Mourning More Than the Loss of Our Health

June 18, 2020 By Sandy 5 Comments

woman wearing white dress,releasing hand and touching the grass; concept of letting go

The grief of chronic illness extends beyond grief over the loss of our health. We mourn the loss of our place in the world.

Grief. We typically think of it in the context of significant loss, like the death of a loved one. Irreversible. Permanent. Deeply painful. But grief isn’t reserved for that. We can and do grieve other kinds of losses. When we’re chronically ill, we grieve the loss of our health – but we grieve the loss of so much more than that, too.

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Filed Under: Chronic Illness Tagged With: grief

Reasons Why You Need a Support Group

June 9, 2020 By Sandy 2 Comments

group of paper chain people

Joining a support group can help you feel understood and give you a sense of belonging. It’s another strategy for living well when you are chronically ill.

How did you feel when you received your diagnosis? Alone? Confused? Afraid? I know I did. There is almost nothing more emotionally isolating than facing a disease that you have very little (if any) control over. This is true whether it’s a chronic illness that can be managed, or an acute illness that is severe and threatens your life.

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Filed Under: Living Well Tagged With: self-care, support groups

Seven Questions to Ask Your New Rheumatologist

June 2, 2020 By Sandy Leave a Comment

notebook and black pen next to cappucino and green plant

If you’ve been diagnosed with an autoimmune disease – or are waiting for a diagnosis – there are seven questions you should ask your rheumatologist.

It’s been a year and half since I was diagnosed with dermatomyositis, a rare autoimmune condition that causes fatigue, inflammation, severe muscle weakness and skin rashes. By the time I was diagnosed I had spent two weeks in the hospital – including a couple of days in intensive care.

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Filed Under: Autoimmune Disease

Four Things No One Told You About the Spoon Theory

May 25, 2020 By Sandy 5 Comments

spoons of different sizes and materials

The Spoon Theory describes how people with chronic illness need to ration the limited energy they have. But there are four things you may not know about being a “spoonie”.

Are you chronically ill? If so, I’m guessing you’ve heard of the Spoon Theory.  It’s a metaphor that uses spoons to describe the practical challenges of living with a chronic condition or disability that has you running on a gas tank somewhere between empty and half full (on a good day). 

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Filed Under: Chronic Illness Tagged With: chronic fatigue, spoon theory

Three Questions to Ask Before Starting the AIP Diet

May 13, 2020 By Sandy Leave a Comment

spinach chicken pomegranate salad AIP

Ready to try the AIP diet? These three questions will help you determine if it’s right for you.

Fix me. That’s what I wanted to say when I finally received my myositis diagnosis.  Since autoimmune diseases can’t be cured – but can be managed – I knew that I had a long road ahead of me (the rest of my life).  And I had felt like crap for so long. I wanted and desperately needed some healing. This isn’t my first serious illness rodeo and I knew that part of my healing would be up to me. 

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Filed Under: Autoimmune Disease Tagged With: AIP, anti-inflammatory foods, autoimmune diet, paleo

Practical Tips for Managing COVID-19 Anxiety

May 5, 2020 By Sandy Leave a Comment

anxious dog hiding under bed

Is a six foot distance enough? Does wearing a mask make a difference? Do I need to sanitize my groceries? Who knows! What I do know is that there are ways of managing COVID-19 anxiety.

I admit it. I’ve spent hours nervously curled up on my sofa worrying about a virus I may (or may not) ever get. And I only have so much control over that – unless I live alone, leave only when necessary and take every precaution short of donning a hazmat suit. Note to self: the hand sanitizer must have a minimum alcohol content of 60%, of course.

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Filed Under: Living Well Tagged With: anxiety, COVID-19

Why Gratitude is the Gift of Chronic Illness

April 28, 2020 By Sandy Leave a Comment

heart shaped growing from knotted rope

We never think of long-term disease as a gift. But gratitude is the gift of chronic illness.

I intended to write about the anxiety of being among the “highly vulnerable” during a pandemic. But the truth is that I spent most of the morning writing a COVID-19 article for work – addressing how employers can plan for the challenges of a gradual return business as usual. Frankly, I’m drained. I’ve spent way too much emotional currency today thinking and worrying about this damn virus.

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Filed Under: Living Well Tagged With: gratitude

Two Simple Strategies for Self-Care

April 19, 2020 By Sandy Leave a Comment

white ceramic cup on saucer

There are two simple strategies for self-care that you can use to reduce anxiety and improve your well-being.

Take care of yourself.  How many times have you heard this expression? If you’re chronically ill, I’ll wager that you’ve heard it a lot.  But what does it really mean?  How do you define self-care?

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Filed Under: Living Well Tagged With: self-care

Five Honest Truths About Invisible Illness

April 12, 2020 By Sandy Leave a Comment

raindrops and plant on wet window sill

You can’t clearly see them, but invisible illnesses span a broad spectrum of diseases including autoimmune, psychiatric and psychological illnesses and other chronic conditions.

Lupus. Fibromyalgia. Inflammatory bowel disease. Rheumatoid arthritis. Chronic fatigue syndrome. Myositis. Lyme disease. Depression.  Bipolar disorder. Post-traumatic stress disorder. HIV.  Pulmonary fibrosis. Chronic obstructive pulmonary disease. Congestive heart failure.  Chronic pain.

What do these have in common?  They can all be invisible illnesses.  This is not a complete list – or even a list of the most common.  But all of these invisible illnesses share these five honest truths:

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Filed Under: Chronic Illness Tagged With: invisible illness

The Road to Diagnosing Autoimmune Disease

March 29, 2020 By Sandy Leave a Comment

overhead shot of road with many sharp switchbacks

With more than 100 types of autoimmune disorders, the road to diagnosing autoimmune disease looks more like an obstacle course composed of traffic cones, construction barricades, and dead end signs. 

Any guess as to how long it takes to diagnose an autoimmune disease?  According to the AARDA it takes about 4.5 years.  And it didn’t surprise me to hear that.  With more than 100 types of autoimmune disease and a broad spectrum of symptoms, getting a diagnosis is like taking a long drive to an elusive destination without the benefit of a working GPS.  Even though more than 20 million Americans have some type of autoimmune disease, I’m betting that each of the journeys to diagnosis was different. 

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Filed Under: Autoimmune Disease Tagged With: common symptoms of autoimmune disease, myositis

Welcome

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Hi! I'm Sandy. If you’ve found your way here chances are you’re living with a chronic illness. Do you need support? Coping strategies? Information? Maybe a little humor? You’ve come to the right place. Join me on my journey. It’s so much easier if we do it together.

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